Board of Directors
- Karen Utley, President
- Rick Upp, Vice President
- Megan Strok, Secretary
- Amanda Jaksha, Treasurer
- Miriam Blase
- Kelly Grodzicki
- Paul Miller
- Kristin Kozera
- Garrett Decker
- Melissa Ralston, Board Member Emeritus
Karen Utley, President & Co-Founder
On July 2, 2008, my life took a major turn with receiving a CDKL5 Disorder diagnosis for my daughter. Samantha had her first seizure at 10 weeks of age, and she was diagnosed at 20 months. As soon as I had a diagnosis, I knew that I had to be proactive to help make a difference. As a founding board member and officer, volunteering gave me a sense of control in an out of control situation. I served as treasurer for 8 years, and in 2017, I transitioned to president. Through these years of serving the IFCR, I have learned the importance of building partnerships and being a strong advocate for rare disease. I am honored to serve in leadership roles for the ELC (Epilepsy Leadership Council) and REN (Rare Epilepsy Network). I am also active with rare disease organizations such as NORD, Global Genes, and EveryLife Foundation. These experiences have ignited a passion in being a strong advocate for our community. In addition, being a support system for other mothers and families of those affected by CDKL5 is a priority. Firmly believing that a cure is possible, I have begun to pursue a bachelor degree in nursing. As I gain knowledge in the areas of science and clinical care, I hope to use it to improve the lives of those diagnosed with a CDKL5 Disorder.
Rick Upp – Vice President
Cynthia and I are parents to Emily (26), Amanda (24), Ethan (19), Olivia (14), and Isaac (13). That’s right, five kids, which makes us the 7 Upps. We live in Spokane, WA. I have a Bachelor’s degree in French from Reed College (Portland, Oregon) and a Master’s in French from the University of Washington (Seattle). Somehow, I ended up in the high tech industry, where I have been working for 25 years. Between formal education, work, and volunteering for a variety of organizations, I’ve developed skills in communication, negotiations, partnering, organization, and problem solving (and, of course, technical skills). I look forward to using all of these to help the IFCR defeat the monster that first raised its head when our Olivia was only two months old.
Although Olivia had her first spasms at two months, it took another 10 years before a specialist in Seattle was able to determine that she had CDKL5. Learning that has changed nothing and everything. Nothing, because it offered no new treatment or cure. But it changed everything because now our enemy had a name, and we had a new focus. Our mission from that day forward has been to defeat CDKL5. We were so excited to find the IFCR and the support group on Facebook. Cynthia and I have been the West Coast Family Support Regional Representatives for the IFCR for a couple of years now, and I was honored to be asked to join the Board of Directors of the IFCR in 2016. I am so encouraged to be able to work together with such an amazing group of parents and incredible leaders to take on this terrible condition. I know together we will prevail! Our angels are depending on it.
Megan Strok, Secretary
I was born and raised in Cleveland, Ohio, where my husband, John, and I live with our three wonderful kids: Lily, Jack and Ryan.
I graduated from Slippery Rock University with a degree in Spanish and International Business in 2000. I eventually went back to grad school for my master’s degree and graduated from John Carroll University with my MBA in 2008.
I have worked at Cleveland Clinic since 2000 in many different capacities. In the years following Ryan’s diagnosis with CDKL5, it became evident that my past experiences –professionally, academically and personally – had been preparing me for my most important role: mom and CDKL5 advocate.
Currently, I work at the Cleveland Clinic Children’s Hospital for Rehabilitation as Assistant Administrator. I am fortunate to be a part of such a wonderful healthcare organization that allows me to contribute to improving the lives of children, especially those with special needs. I am also very involved with our children’s activities, as a member of the PTA, a soccer mom, a Girl Scout troop leader and as a member of the Board of Directors for the IFCR. Our family has also been very involved in fundraising for the IFCR by holding the Annual Strides for Starfish 5K and 1 mile fun run.
I am passionate about “being the change you wish to see in the world,” and I am humbled and inspired to be part of the IFCR Board. It is an honor to work with this group of dedicated individuals towards research and ultimately a cure to CDKL5.
Amanda Jaksha – Treasurer
My oldest daughter, Ava was seven months old when noticeable seizures came roaring into her life. We spent many tumultuous years dangling from a string while managing refractory epilepsy and chasing evidence that might explain her illusive neurological condition. After six years of guesstimating, an answer came in the spring of 2012 that named the culprit in Ava’s complex medical puzzle. Her neuro-metabolic team had finally identified the small deletion in her CDKL5 gene. It was liberating to have a diagnosis and delightful to find the International Foundation for CDKL5 Research in existence. It is an honor to join this amazing Board of Directors and take part in advancing their swift paced momentum towards treatments and a cure. I earned my Bachelor of Science in Business Administration with an Accounting concentration from Colorado State University. My family calls Colorado home and I manage my own accounting business with a focus on managerial accounting. I am also a certified nurse aide; this allows me to provide direct care to Ava as an employee of a large home health care agency. You can find me at the Children’s Hospital Colorado CDKL5 Center of Excellence representing the IFCR, a duty I adore. In unity, we will realize a brighter tomorrow that includes treatment options, a road map for care takers, and ultimately a cure. I embrace the spirit of perseverance; together we can conquer the CDKL5 disorder.
I am honored to serve on the IFCR Board and looking forward to furthering the work already done towards finding a cure for our children and supporting families on their CDKL5 journey. Our son, Landon, was diagnosed with infantile spasms and CDKL5 in 2010. Since then, I have been actively seeking out ways to connect with other families who have children with disabilities through the Facebook support group. I have also worked on the sponsorship committee for the IFCR Family Conferences in 2014 and 2016. I am passionate about finding care teams, resources and education to help parents so CDKL5 children can have the best quality of life possible. With Landon in tow, my husband, Bryan, and I are aspiring runners locally in our hometown of Atlanta, GA. I have spent the last 13 years in corporate financial services with JP Morgan, and I hold an M.A. Industrial Psychology from New York University.
My husband, Chris, and I live in Michigan, and we are parents to four beautiful children, Gabriella, Evelyn, Cecelia, and Henry and two crazy dogs, Duncan and Ramona. I have a bachelor’s degree in Journalism and Public Relations from Madonna University where I played soccer for 4 years. After graduation in 2003, I started working at General Motors as a paralegal supporting the advertising and marketing teams. In my spare time I like to find new ways to decorate our house, create wood signs, and take photos of my kids.
Evelyn, or Evie as we lovingly call her, had her first seizure at 5 weeks old. After years of trying (and failing) to treat her epilepsy, we finally received her diagnosis of CDKL5 when she was 2 years old. While it was a devastating diagnosis, it was also an answer. We finally knew why we couldn’t get the seizures to stop and why Evie wasn’t developing typically. We also knew that we had to fight for our little girl. We knew that we had to spread awareness and raise money for the IFCR in order to help find a cure.
I am honored to be a member of this team of amazing individuals! I am excited to use my creativity and problem solving skills to spread awareness about CDKL5 and help the IFCR to raise money to find a cure!
My wife, Amy, and I live in Colorado with our daughter Natalya. I have a B.S. degree in Secondary Science Education from the University of Iowa and a M.A. degree in Curriculum and Instruction of Secondary Science from the University of Colorado – Boulder. After working approximately 10 years as an environmental chemist, I taught physics, chemistry and earth science for 20 years in Colorado until retiring from teaching in 2015.
Approximately 4 weeks after Natalya’s birth, Amy noticed that she appeared to have a seizure. Her seizure activity then ramped up in the ensuing years after that initial episode. It was about 16 years and 3 genetic tests later that Natalya was given a CDKL5 variant diagnosis. It was a relief to know what caused Natalya’s epilepsy and developmental delay but it was also evident that we were going to have a difficult road ahead of us. Fortunately, Natalya’s neurologist informed us of the Rett Clinic at the Denver Children’s Hospital which also assists parents of children with CDKL5. It was at the clinic that we were introduced to IFCR and I am humbled to be a board member of this dynamic group.
Now that Natalya has completed high school, we have found ourselves navigating a new set of obstacles. Having personally worked our way around these obstacles, one of my goals as a board member is to assist CDKL5 families during the change from adolescence to adulthood in an attempt to make this an easier transition.
Melissa Ralston – Board Member Emeritus
My husband, Ron, and I live in Ohio and have two beautiful daughters, Ava and Vivienne. Vivi is 12 years old and is affected by CDKL5.
We were just settling into our new life with two kids, when Vivi had her first seizure at 4 weeks old. Everything changed in an instant. Our “normal” life was replaced with doctors’ visits, hospital stays, and tests. We received the CDKL5 diagnosis on November 11, 2008. Now that we knew what we were fighting, it was time for us to get busy trying to find a cure for it!
I was so blessed to meet other families that were walking my same path through the online support group. We brought an array of backgrounds together and formed the IFCR in September 2009. I graduated from Ashland University with a BA in Business Administration in 1994 and my MBA in 2000. When Vivienne was six months old, I left to stay at home with her and her sister full-time.
Our family has also been very involved in fundraising for the IFCR, and we’ve recently held our 10th Annual Vivi’s Drive for the Cure Golf Outing. It has been my honor to be a co-founding member of the IFCR, and I remain committed to finding treatments and a cure for all of those affected by CDKL5.